8 Non-pharmacological treatments

8.1 Ketogenic diet

8.1.1

Consider a ketogenic diet under the guidance of a tertiary epilepsy specialist, in people with:

  • certain childhood-onset epilepsy syndromes (see also the section on treating childhood-onset epilepsies), for example:

    • glucose transporter type 1 deficiency syndrome (GLUT1 deficiency syndrome)

    • epilepsy associated with pyruvate dehydrogenase deficiency

    • infantile spasms syndrome

    • epilepsy with myoclonic-atonic seizures (Doose syndrome)

    • Dravet syndrome

    • Lennox–Gastaut syndrome

  • drug-resistant epilepsy if other treatment options have been unsuccessful or are not appropriate. [2022]

Why the committee made this recommendation

The committee were unable to ascertain clear benefits for ketogenic diets in either adults or children with drug-resistant epilepsy from the evidence available. The committee were also mindful of the potential long-term health drawbacks of ketogenic diets, as well as the high-cost implication of providing ketogenic diets. However, from their experience and knowledge, the committee were also aware that benefits are sometimes seen in clinical practice for a small number of people with drug-resistant epilepsy, including children with certain childhood epilepsy syndromes.

The committee decided against recommending ketogenic diets routinely, but did not wish to remove them completely as an option for specialist consideration in people with few further treatment options. They highlighted the need for high-quality clinical data in this area and agreed that a recommendation for research for children and adults on the effectiveness and long-term tolerability of ketogenic diets would help to inform future guidance.

Full details of the evidence and the committee's discussion are in evidence review 12: ketogenic diets for drug-resistant epilepsy.

How the recommendation might affect practice

Ketogenic diets are not routinely offered and so the recommendations are unlikely to have an impact on current practice.

8.2 Resective epilepsy surgery

Referral for resective epilepsy surgery assessment

8.2.1

Discuss the options for assessment for resective epilepsy surgery with people who have drug-resistant epilepsy, and their families or carers if appropriate. Explain what the process of surgical assessment involves as well as the benefits and risks associated with surgical procedures. [2022]

8.2.2

Refer people with drug-resistant epilepsy, including those without identified MRI abnormalities, for consideration of assessment for resective epilepsy surgery:

  • For adults, this should be to a tertiary epilepsy service.

  • For children and young people, this should be to a tertiary paediatric neurology service for consideration of referral to a children's epilepsy service surgery centre. [2022]

8.2.3

For people with MRI abnormalities that indicate a high risk of drug-resistant epilepsy, consider early referral to a tertiary epilepsy service for assessment, including an evaluation for resective epilepsy surgery if appropriate. Examples of specific lesions seen on MRI may include, but are not limited to, the following:

  • hippocampal sclerosis

  • malformations of cortical development

  • epilepsy-associated low-grade tumours

  • hypothalamic hamartomas

  • neuronal migrational disorders

  • tuberous sclerosis complex

  • vascular malformations, including Sturge–Weber syndrome

  • cerebral contusions from previous head injury. [2022]

8.2.4

Do not exclude people with learning disabilities or underlying genetic abnormalities from referral for resective epilepsy surgery assessment if it is indicated. [2022]

Why the committee made these recommendations

The evidence on surgical interventions showed that resective epilepsy surgery is the most clinically effective treatment for children, young people and adults with drug-resistant focal epilepsy. This was based on the evidence showing better quality of life and lower rates of recurrence after surgery compared with medical care. The committee also considered the relative harms of surgery, such as higher rates of postoperative cognitive deficits and other adverse events. The benefits of surgery were agreed to outweigh these harms, because in many cases, the cognitive effects did not cause significant dysfunction in everyday life, and many of the other adverse events (perioperative infection, bleeding and postoperative changes in mood) were self-limiting. In addition, the committee noted that the risk of harm from surgery needed to be balanced against the risks of ongoing seizures, which include injury, head injury and sudden unexpected death in epilepsy (SUDEP). The committee accepted that the risk of harm may increase as the surgical complexity increases, but agreed that the overall balance in favour of a benefit is likely to apply across most types of epilepsy surgery for both children and adults.

Original health economic modelling was undertaken to assess the cost effectiveness of resective epilepsy surgery in adults. However, insufficient data were available to model cost effectiveness in children. The results of the analysis indicated that resective epilepsy surgery was cost effective in adults. Overall, the committee concluded that resective epilepsy surgery was also highly likely to be cost effective for children because they typically have better outcomes after surgery than adults, and the benefits of surgery are experienced for longer. The committee did note that the cost of assessment for resective epilepsy surgery may be higher in children, but these costs would likely be offset by later savings in the form of fewer outpatient appointments and the benefits observed from resective epilepsy surgery.

No evidence was found on the most effective criteria for referral. However, the committee agreed that because benefits from surgery would outweigh harms across all the populations considered, including improvement in seizure control, potential seizure freedom, better quality of life and reduced risk of epilepsy-related death, all people with drug-resistant epilepsy would benefit from a referral to a tertiary centre for consideration of resective surgery, including those without identified MRI abnormalities.

The committee also discussed whether there were other groups that might benefit from a referral for consideration of surgery. The committee agreed, by consensus, that people with specific MRI abnormalities that might indicate future resistance to antiseizure medication, should be referred to a tertiary centre at diagnosis, rather than waiting until treatment is unsuccessful.

In addition, the committee discussed that, in their experience, people with genetic abnormalities or learning disabilities can sometimes be excluded from referral to a tertiary centre for consideration of surgery. This may happen because it is thought that surgery is not suitable for them, or they might be erroneously considered unable to cope with surgical assessment. The committee agreed they should have treatment in the same way as other people with epilepsy and be referred if indicated.

Full details of the evidence and the committee's discussion are in evidence review 13: referral and surgical interventions.

How the recommendations might affect practice

Only a proportion of people with drug-resistant epilepsy are referred for resective surgery currently, because of relatively low levels of epilepsy surgical treatment provision, as well as lengthy waiting times for presurgical assessments. Therefore, referral of all people with drug-resistant epilepsy to surgical centres will probably lead to an increase in presurgical investigations and surgical procedures. This may necessitate the need for more epilepsy surgical training and a greater investment in epilepsy surgery programmes.

Referral of people whose epilepsy is not drug resistant might increase the burden on tertiary centres, but the number of people in these groups is likely to be relatively small.

8.3 Vagus nerve stimulation

8.3.2

Discuss with the person with epilepsy, and their family or carers if appropriate, the benefits and risks of vagus nerve stimulation before making a shared decision about having this procedure. [2022]

Why the committee made these recommendations

There was no long-term robust evidence on vagus nerve stimulation in epilepsy. The committee noted that there is variation in current use, but that it tends to be offered when antiseizure medications have failed to control seizures and epilepsy surgery is not suitable or has not been successful. There was no evidence to suggest that use of vagus nerve stimulation should stop for this small group with complex needs and few management options. The committee agreed that the benefits and harms should be discussed with the person because the intervention does not work in all people and is not a risk-free procedure. NICE has published interventional procedures guidance on the use of vagus nerve stimulation in children with refractory epilepsy. The committee agreed that more research is needed in this area and drafted a recommendation for research on the effectiveness of vagus nerve stimulation.

Full details of the evidence and the committee's discussion are in evidence review 14: vagus nerve stimulation.

How the recommendations might affect practice

The use of vagus nerve stimulation in practice is currently quite varied. It tends to be a palliative procedure for people with epilepsy that is resistant to treatment and who are not candidates for surgery. The recommendations are not expected to lead to a large change in current practice.